About

About

Every brain tumour patient matters, they count!


Our goal is to provide comprehensive data on the incidence, prevalence, and survival rates for all primary brain tumours (malignant and non-malignant) periodically by important patient characteristics (location, histology, sex, age, and region) to better understand the patterns of occurrence and survival.

These patterns will stimulate hypothesis about causes, treatment, and improved outcomes in the neuro-oncology research community and will support clinical and policy guideline formation.

Brain Tumour Foundation of Canada identified the gap in available information on Canadian brain tumour patients and prioritized development of a pan-Canadian surveillance report.

A collaboration to explore the feasibility of this goal was developed between Brain Tumour Foundation of Canada and Dr. Faith Davis at the University of Alberta in 2012 and the award of a Brain Canada grant in 2015 provided additional support to create this data collaboration.

The collaboration of four provincial cancer registries (British Columbia, Alberta, Manitoba, Ontario) has made this first incidence report possible. Our appreciation is extended to every individual this information represents.

METHODOLOGY

A high-quality cancer registration system has been in place in Canada for many years, and a Canadian Cancer Statistics (CCS) report is annually published with rates for all cancers, including brain cancers.

These reports reflect brain cancers, as they have not traditionally captured data on non-malignant brain tumours, which can be just as life-altering as malignant brain tumours.  Parliament of Canada 2007 private members bill (M235) focused on addressing this gap by incorporating high quality data on all primary brain tumours in the current surveillance system.

This surveillance report builds upon CCS reports by reflecting data on all primary brain tumours from four provinces. These provinces have generously collaborated with the Brain Tumour Registry of Canada (BTRC) to ensure that all tumours are captured in the provincial cancer registry.


The data integrity is a culmination of the work within each province to complete case ascertainment and data abstracting/coding processes for patients diagnosed from 2010 to 2015. These provincial data have been shared under appropriate ethics board approvals and data sharing agreements for the purpose of creating this surveillance report.

This report has been compiled at the University of Alberta and provides population-based incidence rate estimates by tumour location, histology, behavior, sex, age and region. Emphasis on future data quality improvement efforts is included to provide support of all Canadian Council of Cancer Registry member efforts to evaluate the implementation of the 2007 law.

A follow-up national report utilizing the Canadian Cancer Registry data files incorporating all provinces and territories is planned in collaboration with the Public Health Agency of Canada (PHAC) in 2020.

Dr. Faith Davis
Professor, PhD, FACE, FCAHS

Dr.-Faith-Davis

Dr. Davis, professor and vice-dean at the University of Alberta's School of Public Health (2012- 2018) received an undergraduate degree from the University of Alberta in 1970, studies which culminated in a PhD in Chronic Disease Epidemiology from Yale University in 1984.

During her career she has identified factors that influence the occurrence and survival of rare cancers and received major research grants, including Brain Canada and CIHR. Her cancer research is multi-dimensional, extending from genetics to socioeconomic and ethnic disparities in survival with over 170 peer review publications.

In the field of brain cancer, she has held key leadership roles, including founding co-chair of the Brain Tumour Epidemiology Consortium (2004-2012) and research director of the Central Brain Tumor Registry of the United States (1994-2000).

As Professor Emeritus, she continues brain tumour research and serves on the Board of Scientific Counselors at the NCI(US).

Dr. Davis was elected Fellow of the American College of Epidemiology in 2008 and served as its President (2009-2012). In 2012 she was recruited back to her home province of Alberta, as Vice Dean of the School of Public Health, University of Alberta.

She received the Geoffrey R. Howe Distinguished Contributions Award from the Canadian Society for Epidemiology and Biostatistics in 2015 and was elected a fellow of the Canadian Academy of Health Sciences in 2017.

Feedback from the brain tumour community


Joseph F. Megyesi

“Our hope is that the Brain Tumour Registry of Canada will help us to better understand the cause of the many different kinds of brain tumours in Canada and worldwide, and that ultimately it will lead us to better treatments and possibly even a cure for this devastating disease.”

Joseph F. Megyesi, MD, PhD, FRCSC Division of Neurosurgery London Health Sciences Centre, University Hospital, London, ON Past-Chair, Board of Directors, Brain Tumour Foundation of Canada

Marshall Pitz

It is critical to know the true incidence of brain tumours in Canada so that we can start to truly understand the burden of these diseases. For patients, I hope this means knowing they will have a voice in the numbers. For researchers, this means being able to more accurately understand brain tumours, the people they affect, and their impact in Canada.

Marshall Pitz, MD FRCPC, Medical Oncologist, CancerCare Manitoba

Jennifer Gouchie-Terris

The creation of a national registry is the epitome of hope by ensuring that every brain tumour gets counted in Canada and providing us with a better understanding of the causes of the disease. Thanks to the hard work and unwavering commitment of so many people for over more than a decade, it is finally coming to fruition.

Jennifer Gouchie-Terris, Mother of Brandon (1994-2012), New Brunswick

J. Easaw, MD

By improving our understanding of the incidence of brain tumours in Canada, we gain an understanding of the burden of disease between different geographical areas, between different socio-economic groups and within Canada as a whole.  These estimates ultimately help us develop appropriate longer term cancer control strategies and be used by health authorities to plan the resources needed to treat patients with these tumours, deliver rehabilitation services, screen for recurrences and provide funding for longer term counselling and support.

J. Easaw, MD, Neuro Oncology Cross Cancer Institute, Edmonton, AB

Lawrence Traa

I am a brain tumour survivor. When I was diagnosed, six years ago, I went to an event where the researcher talked about how the data he was using was extrapolated from data from the USA and applied to the Canadian provinces. It’s so important that researchers use Canadian data. I immediately became an advocate for this Registry and am so pleased to see it come into existence.

Lawrence Traa, Brain Tumour Survivor, Manitoba

Rosemary Cashman, Nurse Practitioner BC Cancer, Vancouver and Board of Directors Brain Tumour Foundation of Canada

The Brain Tumour Registry will permit the standardized collection of epidemiological data concerning benign and malignant brain tumours across Canada. This critical advance will provide a firm foundation for brain tumour research, facilitate the allocation of government funding to support patients and families and lead to improved access to better therapies for these diseases.

Rosemary Cashman, Nurse Practitioner, BC Cancer, Vancouver, Board of Directors Brain Tumour Foundation of Canada

Our partners

Data have been provided for this report from:
British Columbia, Alberta, Manitoba, Ontario

This work has been funded by Brain Tumour Foundation of Canada, the Brain Canada Foundation through the Canada Brain Research Fund, with the financial support of Health Canada.